I have recently developed dizzy spells but have been reassured that is not related to my Moya Moya -  more inner ear related. My doctors suspect BPPV. I was just wondering, is there any practical advice for dealing with dizzy spells please? I am currently on medication that is supposed to alleviate dizziness and the associated sickness but have been dizzy for the past two days again. It seems to be related to movement of my head, which is why my doctors suspect BPPV. Another drug that they tried me on before this one simply did not work and after a week of being fine with this new one, am concerned that this one is starting not to work too. I'd be so grateful for any advice as I am getting a bit desparate and really don't want this to affect my work. I have also been feeling very tired, even before I started this new medication that can cause drowsiness. The tiredness has been going on for a few months now and I still get "grey outs."

 I have that problem too.... especially if I turn my head too fast.  I have used a neck brace because of weak neck muscles &  vertabre slippage, worn not to tightly, to keep neck centered & not squeezing the carotid arteries, it helps a bit with the dizziness, I am also taking ativan (1/2 mg) every time I feel myself starting to get funky ( twice a day sometimes).... BTW, I also have anxiety disorder, not associated with moyamoya, but it adds to the feeling of dizziness felt.

  Hang in there... praying for your healing...

  Blessings
 ~ 808annie

808annie,

Thanks for your reply. I'm sorry to hear that you're going through the same but it's comforting to know that there is someone out there that knows how it feels. Sorry, comforting is the wrong word - hope that didn't sound over dramatic but you know what I mean :)

My doctors haven't mentioned anything about anxiety and seem to be insisting that it's my ears.  However the medication I'm on is meant to help with dizziness, nausea and anxiety. I spoke to my Neurologist in London and he reckons the dizziness is ear related. Having said that though, he also went on to say that if the dizziness increases then he wants to move my scans forward - am scheduled for follow up scans within the next six months.

Will try not moving as quickly and chill out a bit. That can't be too hard considering the sedative effect this med is having!

Anyway, thanks again for your reply,

Roz

your not on any siezure medication are you? I know when I was on Dilantin I was  getting dizzy spells often. Now that i've switched from dilantin to another anti-siezure medication, I still get them but rarely. What I would do is just sit down and breathe deeply in and out for a bit then get up when I felt ready to walk again



Roz wrote on May 28^th, 2005 at 3:26pm:

I have recently developed dizzy spells but have been reassured that is not related to my Moya Moya -  more inner ear related. My doctors suspect BPPV. I was just wondering, is there any practical advice for dealing with dizzy spells please? I am currently on medication that is supposed to alleviate dizziness and the associated sickness but have been dizzy for the past two days again. It seems to be related to movement of my head, which is why my doctors suspect BPPV. Another drug that they tried me on before this one simply did not work and after a week of being fine with this new one, am concerned that this one is starting not to work too. I'd be so grateful for any advice as I am getting a bit desparate and really don't want this to affect my work. I have also been feeling very tired, even before I started this new medication that can cause drowsiness. The tiredness has been going on for a few months now and I still get "grey outs."

ben0405mm,

Thanks for your post. I'm not on any anti-seizure med but am becoming more convinced this is ear related rather than my Moya Moya. I'm having a scheduled MRI in due course so I'm sure that will be reassuring plus I'm waiting for an appointment from the ear specialist.

Best wishes,

Roz